The cancer diagnosis former President Biden received was difficult — stage 4 prostate cancer — but has become more and more common in recent years. This trend line, cancer experts said, is not widely known, even among physicians, and points to a need to dispel myths about prostate cancer screening.

If caught early, prostate cancer can have very good outcomes — the five-year relative survival rate at earlier stages is almost 100%. In the metastatic setting, that drops to 37%. Current guidelines recommend that men from the ages of 55 to 69 have a discussion with their provider about screening, which can prevent advanced prostate cancer. Still, that rise in late-stage diagnoses seems to have continued through the last decade and a half.

Experts said that might be due to the fact that prostate cancer screening had once been mired in controversy around whether it caused more harm than benefit. That may have led to a drop in prostate screening years ago that could be resulting in a rise in metastatic disease today, even though experts no longer debate the benefit of prostate screening.

“In the last 10 years, there was this uncertainty, and people landed on one side or the other,” said Ruth Etzioni, a cancer researcher and biostatistician who studies cancer screening at the Fred Hutchinson Cancer Center. “Today, the message needs to get out that, done properly, this is a beneficial intervention, and we all basically agree on this.”

In the American Cancer Society’s annual report in 2023, researchers observed that cases of advanced prostate cancer, including cases that had spread to nearby or distant tissues, had risen roughly 4% to 5% each year from 2011 to 2019 in the country. This year, investigators at the University of California, San Francisco, noted in a paper published in JAMA Network Open that cases of advanced prostate cancer rose an average of 6.7% per year between 2004 and 2021 in California specifically. The national SEER database also reflects a roughly 6.5% per year increase in metastatic prostate cancer diagnoses between 2012 and 2022 for all ages and ethnicities.

“It’s huge for cancer. We don’t see cancer rates changing that fast very often. A lot of people have hypothesized it reflects changing the PSA screening guidelines,” said Erin Van Blarigan, an epidemiologist and cancer researcher at UCSF and the lead author on the JAMA paper. “The change we observe really started in 2011 to 2014.”

That was around the time the prostate cancer screening test, called the PSA or prostate specific antigen test, started to fall out of favor. The landmark trial that studied the effectiveness of the PSA test was called the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial, and it showed in 2009 that men who were assigned to PSA testing didn’t experience any mortality benefit compared to men who weren’t assigned to PSA testing. That kickstarted the controversy around PSA testing, and also ultimately led the United States Preventive Services Task Force to downgrade the test’s recommendation in 2012.

But later, prostate cancer experts pointed out that nearly 90% of the men who were assigned to get no PSA testing actually did the test anyway. That made it difficult to take the study results at face value, since patients on both trial arms got screening. A European trial later showed that PSA testing did in fact provide a mortality benefit, but that also failed to broadly convince the medical community that the screen was worth it.

That’s because prostate tumors can vary wildly in their aggressiveness and prognosis. Overall, prostate cancer is one of the most common cancers in men, with over 300,000 men diagnosed each year in the United States. Most of these are found at an early stage. It’s also often commonly diagnosed in elderly men, and many prostate cancers are considered “indolent” — tumors that grow slowly enough that they don’t really cause any problems for the patient in his lifetime. Less than 7% of the cancers in Van Blarigan of UCSF’s paper were identified as advanced or aggressive forms of prostate cancer.

“That’s the challenge. If you’re diagnosed in your 70s with non-aggressive prostate cancer and other comorbidities like cardiovascular disease may be a greater risk to you, this additional diagnosis is only harming your health and not helping you,” Van Blarigan said.

Physicians still cannot always tell which prostate cancers will become aggressive and metastasize, but hitting every cancer caught on PSA screening with drugs, surgery, radiation, or a combination of those would surely be overtreating most of these men. These negative trade-offs to screening were enough that many experts weren’t convinced that PSA testing was worth it for many years.

But several things have changed that. For one, active surveillance is a standard option for many patients whose tumors don’t appear to have certain aggressive features. These patients can forgo medical intervention and just “watch and wait.” The use of MRI in screening has also played a big role in reducing the harms of PSA testing, as a study in 2024 showed using MRI with PSA testing can help reduce prostate biopsies and reduce the diagnosis of “clinically insignificant” cancers by not bothering to biopsy prostates that don’t have visible lesions on MRI imaging.

“We had active surveillance,” said Hutch’s Etzioni. “Then we had MRI which really narrowed the funnel to diagnosis. We now have a way to not even see those cancers that would give such a dilemma. There are new biomarkers, too. The harm benefit ratio is looking a lot better.”

That’s all led to experts coming to a new consensus in recent years that PSA testing is worth the trade-off — though that hasn’t helped men who weren’t getting screened after 2012 when the USPSTF downgraded its PSA testing recommendation. Biden, who would have been 69 years old at the time, would have been just aging out of the current general guideline — although experts add that patients should take into consideration their own personal health and co-morbidities when thinking about PSA testing (a vigorous 80 year old might benefit more from the test than a very sick 70 year old). Biden’s last PSA test was in 2014, according to a spokesperson. The task force later changed this guideline again in 2018 to recommend men have a conversation with their doctor about PSA screening.

“It was an unfortunate time period that men weren’t getting screening,” said Tanya Dorff, a medical oncologist who focuses on prostate cancer at City of Hope. “That’s likely what contributed to this significant increase in advanced diagnoses where the cancer is detected at a later stage but is less curable.”

There are some other potential reasons more men are getting diagnosed with prostate cancer at later stages, Dorff pointed out. For one, PSMA PET scans, a technique that helps diagnose and stage prostate cancer by using a label binding to a common prostate cancer protein, has helped clinicians find more metastatic disease in recent years. Though, Dorff said, that became more popular in the 2020s and might not explain the rise in advanced prostate cancer beginning around 2011.

“This is a conversation that’s been occurring in our prostate cancer community for a while now,” Dorff said, adding that she felt clinicians have been observing more advanced cases. “I think this is worrisome and significant, and we should be very diligent in emphasizing prostate screening to try to rectify this situation.”

In particular, she added, it’s important for people who are already at higher risk of prostate cancer — which can include those with a family history or with African ancestry, as Black Americans are more likely to be diagnosed with prostate cancer and have worse outcomes — to discuss screening with their doctor.

The task force’s website indicates that an update is in progress for those guidelines. A revision could help reverse the rise in advanced prostate cancer diagnoses, experts said, as will continuing support for understanding cancer early detection and surveillance.

“We wouldn’t know any of this without investment in cancer research, so continuing to invest and prioritize that research will be important,” Van Blarigan said.